Issue 97, June 2007
Auckland and Northland News
2007 World Congress On Huntington's Disease
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The world congress on Huntington's Disease, will take place in Dresden Germany from Saturday September 8th 2007 to Tuesday, September 11th 2007.
Before the Huntington's World Congress there will be a European Huntington's Disease Network meeting from 6th September 2007 to 8th September 2007. If you would like to have a look the website is www.worldcongress-hd.net
The World Congress will be supplemented by a meeting of the International Huntington Association (IHA) on Monday 10th September 2007 and Tuesday 11th September 2007, which will feature updates, reports and presentations, related to the work of IHA members around the world.
Kim Smith (Auckland Committee member) will be New Zealand's official representative at the IHA and the congress feedback will be given following the event.
Our A.G.M will be held on 30th June 1.30pm to 3.30pm at
Disability Resource Centre
14 Erson Ave
Further details will be mailed out. If you are not on mailing list then please contact me on
Free phone 0800 HD AUCK or 0800 432 825
Mobile 027 432 8255
We were fortunate to be present at the Neurological Awareness Day, which was well attended and a good opportunity to help raise awareness of Huntington's and to network with other group's.
I have been really busy here in the Waikato. I have now met most of you and/or your families and I hope you feel comfortable to contact me if you feel I can help at any time. I usually have my mobile on me. If I haven't made contact with you yet please call me. My contact details are on the back of this newsletter.
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We also have a few families who have recently contacted us for the first time. I hope you have felt supported through the last few months and will continue to do so.
At our support group meeting we were lucky enough to have Pat Simpson the Neurology Nurse Educator from Waikato Hospital come and talk to us about Huntingtons. She is a wealth of knowledge and I think everyone there benefitted from the evening.
Our next evening meeting is on the 11th of June. Keep this date free.
Our "Carers Coffee and Catch-up" is really worthwhile. It is on a Saturday morning for carers of people with Huntingtons and I feel the support this group gives is really important. Next date July 7th. All carers/family welcome.
Don't forget I am here to help and am only a phone call away.
(Covering the following Wellington Huntington's Disease Association employee areas:
Hawkes Bay, Taranaki, Wanganui, Manawatu, Wellington, Wairarapa, and Gisborne).
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Congratulations to Carly and her extended support team for completing the Ironman, Taupo in early March. Carly, her family and supporters did a lot to raise awareness of HD in our local community. Your efforts and hard work are hugely appreciated. Thank you to you all.
March saw the inaugural "Hunt 4 Huntington's", a fundraiser in conjunction with the Amazing Maze in Maize, Hastings. Jan and her family and supporters worked extremely hard to get this event underway and it is hoped the event will grow each year.
Thank you to everyone who was involved.
The Hawkes Bay support group continues to meet and new families are always welcome.
After 10 years of being social worker for the HD Association Hawkes Bay, I have decided to leave this position. I have really enjoyed my involvement with the Wellington Association and working as part of a social work team with Lynn, Carla and Gill. Thank you to Cecil and Graeme in their roles as Chairperson, to Dorothy for her enthusiasm and knowledge, and to the committee members for continuing to support the development of services to families.
I would like to acknowledge all the families I have met; the gracious way you have taken me into your lives and contributed to my learning about HD. Thank you.
New social work appointment for Hawkes Bay
I would like to welcome Sheila Roberts to the social work team. Sheila has extensive experience in social work both in New Zealand and the UK. She has worked in many health settings including, mental health, physical health and disability and has been responsible for establishing and supporting the development of community projects with local groups. Sheila's most recent work has been with Hospice in the UK.
Over the next few months Sheila and I will work together, meeting HD families in Hawkes Bay.
Greater Wellington, New Plymouth, Wanganui and Palmerston North
We have just come back from the Young People's Camp, and are feeling so energized. This camp really reinforced for me how important it is for young people living with disability in the family, and facing the possibility of having the same disability, to have contact with their peers. As they talked and shared their personal stories with each other, they shared their grief, loss, fear and worry. As they shared in the adventures, team experiences and activities, they shared their courage, strength, bravery and joy. It reminds us of the old adage, that a sorrow shared is halved and a joy shared is doubled.
The camp is a truly worthwhile experience for these very special young people, and we would encourage you to support the next camp in any way that you can, either recommending it to a young person that you know, or donating goods, services or financial support, to ensure that these camps can continue to run and provide the peer contact that these young people want and need.
Our support groups and the Wellington swimming group continue to meet regularly. New members are always welcome just give us a call for further details.
Lynn Farrow and Carla Perry
A quiet start to the year but are now in full swing with plans for local fund raising and also for a visit and lecture from Alice Christian of the Wellington Genetics Team. We are hoping this will happen in June, as we are such a small group here in Gisborne we have teamed up with the Alzheimer's Society to plan this event.
A recent visit to Wellington for the social workers meeting was a really beneficial time for me, not only for my own professional development, but it was such a plus to visit Amaryllis House and meet the staff there.
The Wellington HDA committee and employees would like to thank Jane for her dedication, support and encouragement over the years and wish her all the very best for her next 'chapter'.
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Hello everyone, the Christchurch Association continues to promote our cause and make people aware of HD and the daily grind some of our families face.
We have a film evening fundraiser coming up in the next week, which is always a great chance to get out there, sell tickets and have the chance to bring together our HD families and friends for a night of fun. The Flying Scotsman is the movie we are all seeing and the reviews so far have been very good so we look forward to a great night.
We have also been busy selling Chocolate and Moro bars in our yearly fundraiser which is always very popular and we would like to thank everyone for the great effort with this as the money raised is always put to good use.
Two of our young folk attended the Young Peoples' Camp recently and the feedback that I have had has been all positive, this is a wonderful event and a great chance for our young ones to challenge themselves in a very supportive environment. Thank you to the Wellington Association for all the work put into this event.
Our committee has set up a new fund called "Make A Wish Fund" this was established with a generous donation from someone close to us all and is to make happen things that we take for granted and that our HD loved one's would usually miss out on due to lack of money. This will be at the discretion of Lynne who works with these people and sees the need for a wish or a treat to come true.
The health professionals that we come into contact with are sometimes just as frustrated as we are over the lack of funding available and the constant struggle some of our families face trying to get the appropriate help and care. The best thing we can do is talk about it to everyone that will listen; we have to draw more attention to the plight of our HD families. Hopefully this will make a difference.
Can I take the opportunity as the first year of my role as chairperson of our association draws to an end, to thank our wonderful and dedicated committee, some of who have been on the committee since the forming of the association over 20 years ago. Thank you for all the tireless work that you do. Some of this while trying to cope with your own HD journey. Your dedication to the HD community is overwhelming and we are all the better for your guidance and commitment.
Never underestimate your contribution no matter how big or small, as we are all the better for it, problems shared and discussed and hints or reassurance given is always a comfort for those on the receiving end of it, keep up the great work everyone!
(03) 960 5913
From our Fieldworker:
After my first year as fieldworker I feel that I now belong to a community of 40+ families who share the challenge of Huntington's Disease.
Some of you I have never met and some have chosen to withdraw from the community and cope in your own way.
Whatever your choice, I have enjoyed the gatherings where there is an easy acceptance and understanding of each others journey.
There is strength and support in unity and a greater opportunity to collectively lobby for better conditions and services for our HD people.
I remain committed to the idea of a residential HD house, where their needs are paramount and their youth catered for, with specially trained and stable staff. Sometimes, I think we need to take a giant leap and start off with 3 HD flatmates renting a house and see how it evolves?
Lynne Switzer, Fieldworker
(03) 326 5189